Going through life with an unpredictable disease such as CF, it forces you to develop thick skin! It's interesting to me when people find out that you are chronically ill they look at you in new way. The best is what people say to you and about you when they are healthy and think they "know" your disease.
It's almost like people tend to believe what or how they think I should act about my life. Living with a debilitating, life long, terminal illness I've heard it all like;
1. "You're sick again? You said you were sick last week too. Very convenient!"
📆 Cystic Fibrosis isn't the common cold and doesn't just go away! If I am sick it normally takes me 2-3 weeks of antibiotics before I start feeling better! Trust me I'd rather be going out with friends than sitting in a hospital bed for 16 days or more.
2. "Funny, she couldn't go with us to the mall yesterday, but she's dancing her ass off at a concert tonight?"
🎶One of the unexpected things about CF is that you can have all the energy in the world one moment and then two hours later you can barley walk to the kitchen. Do you really think I like being stuck in my house while all of my friends go out and paint the town? I've missed alot of special events for my friends and family and it devastates me!! However, there is nothing I can do about!
3. "She's perfectly fine! Look at her and tell me why she's can't work or go to school full time? If you ask me she's just playing the sick card."
💳 What makes anyone think that I would rather not be working than being independent and making my own money? CF takes away a ton of things in life and being able to work and attend classes are two of those things for many of us. I can't stand or walk for long periods of time without needing a break. I can't really lift a lot of heavy things with out struggling to catch my breath. I get winded just by standing and I hate it. Honestly, I'd give anything in order to go back to work or school full time. Unfortunately, I literally can't.
4. "Do you really need to sleep so much? Why are you so lazy?"
🛏 It seems like I'm lazy to you, I understand that but, it takes all of my effort some days to get out of bed. Cystic Fibrosis is primarily a lung disease and most people have no idea how much they take breathing for granted. When we sleep we are actually working overtime to breathe which doesn't allow us to be fully rested! It's a constant battle that I have no control over. So, yes I need to sleep that much I'm not lazy. It's sadly, not that simple.
5. "Look at that young woman parking in a handicapped parking spot. There is nothing wrong with her. She should be ashamed of herself"
♿ This one really gets me! I would love if my health matched the way I look on the outside. Being handicapped isn't always visible to the naked eye. I never like using the handicapped spots or the scooters in stores, but sometimes I have to. I feel terrible everytime I need to use these things. Even more so when people make horrible assumptions about me, without knowing my lungs only function at 20%, walking is difficult for me. Which is why those accommodations for someone like me are very important. You don't have to see my decaying organs for me to be handicapped.
I could go on and on with these examples that I've personally heard, but I think you get the idea. The quote, "Never judge a book by it's cover" is something everyone should live by.
I may have to cancel lunches, meetings, or even parties and that's out of my hands. Please, when you go to criticize a Cystic keep in mind we're not making it up. We don't want to live like this. We don't want to miss out on making memories. It's not like we can just slap on a patch or take a pill and get over it. We didn't choose CF, CF chose us!!
Think before you judge,
Sandi
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